Campaigning Medicare Australia for PGD funding

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In my late 20's it was discovered that I had a dominant genetic condition, this means that I have a 50% chance of passing on my condition to any children I have.

After a follow up with a Genetic Counsellor I was advised that my options to prevent passing this on were the following:
- Choose not to have children,
- Choose to do CVS early in the second trimester of a naturally conceived pregnancy and have a termination based on the results,
- To do IVF and use Pre-implantation Genetic Diagnosis (PGD) to screen embryos and then only use the embryos that test negative for the condition.

Despite the fact that CVS and termination appear to be a much more financially viable alternative for both Medicare and the Patients/Family, many people would agree that finances should not be the sole factor in the decision to fund, or not fund PGD. Termination is an extremely emotional process for some women and would potentially have to be something that a couple goes through multiple times in their quest to become a family.

Termination is prohibited in many cultures and belief systems, as well as still being considered a criminal offence in some states. This means that families with a hereditary genetic condition are at a much higher risk of delivering a child with a severe illness, which will then be a substantial cost to Medicare, the NDIS and potentially Centrelink if the ill child requires a parent to stay home full-time past the child’s infancy to care for them.

CVS is performed at 10-19 weeks gestation, this means that, after waiting for specialised tests to be performed, many women will be terminating in their second trimester. This involves a dilation and curettage (D&C), rather than taking a tablet to induce a miscarriage. Amniocentesis carries a lower risk of miscarriage than CVS but must be performed even later in the pregnancy.

I believe if PGD is funded by Medicare more prospective parents with hereditary genetic conditions will be inclined to screen for them, this could potentially eradicate diseases such as Huntington’s, Cystic Fibrosis and Thalassemia as well as inherited genes that increase the risk of cancers, such as the BRCA genes.



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